4P- Families Get Together

What lies behind us, and what lies before us are tiny matters, compared to what lies within us.

Ralph Waldo Emerson

This is so true for our kids with 4p-, their siblings and us, the parents.

As many of you know, the rather large group of of Pennsylvania and New Jersey WHS parents got together yesterday at the home of Ken and Lauren, parents of Norrah and Izzy, to meet new families and reunite with ones already acquainted. For the families, old and new, it is a great source of support, friendship, encouragement and hope.

One main theme that came up quite frequently was the rather dismal and gloomy future that is predicted with the kiddos at the time of diagnosis. Especially for newer families, but for all families, it is great to meet and witness the gains and progression our special little ones are making.

Upon diagnosis, you are most typically told you'll never meet another child with 4p-. You will. They were 8 children present yesterday to support that. It is rare though that there are so many in this area which does cause one to wonder. Is there an increase in 4P- cases? Is there an environmental cause? Are we just more aware and connected because of the internet and facebook? Hmmmm....

Most of us were not aware of this condition until our children were diagnosed with it. And we all agreed that it was definitely for the best! Why you may be asking? Because, still to this day, the information out there is so bleak. Your child will not walk. Your child will not talk. Your child will be devoid of any personality... While it is true that some may not walk or talk, many do. And even those that do not talk... Well, let's just say that they communicate their needs and desires very well. These kids do play with toys. And, most definitely, ALL of the children do have a definite personality. A very sweet personality at that!

There was a unanimous agreement that the info. given to new parents needs to be updated. While it is true that your life does change, and is turned upside-down and inside-out for awhile, you do learn how to adjust and go on. Sorrow fades away and happiness and joy abound.

So, just what do we talk about? The diagnosis... How we feel about it... The numerous doctor appointments... What therapies our kids are getting... Seizures... Medicines... The progress of our kids... The effects on the siblings... And the joy these kids bring to our lives!





An added bonus this time for Nathaniel was meeting Brandon, a navy pilot, who recently graduated from Top Gun. In the picture below, Nathaniel is seated between Jim and Brandon, taking in all he can about his obsession... Fighter jets! Brandon flies the F-18. Thanks Brandon, Nathaniel loved this!



Thanks also, to Ken and Lauren for having everyone. And thanks Lauren for having Holly over to take pictures of the kids. And thanks to Holly as this is no easy job!


Mia, Tanner and Norrah


Haley and Riley

And finally, we met two new families. The whole way from South Carolina is Riley (above with Haley). We felt like we already knew her though because her mommy is the most faithful blogger ever. And I'll tell you, she is just as sweet and makes the cutest sounds!

We also met Kaylee and her family from New Jersey. Kaylee is so small and so cute! At nearly 3 months of age, she was the newest member and her mommy keeps a very well written and honest blog about their new journey and the acceptance and emotions with it.

There are links to right for Riley, Kaylee, Tanner, Karly and Norrah for those of you, mainly family and friends, who don't follow them but are interested in what other kids are doing.

And, lastly, I'll leave you with my favorite image of the day. I love the emotion in it. And I love the shadow on the wall from the fireplace that resembles a cross. A little reminder that God had his hand in this and they are truly little angels. Our little ones all have so much in common, but first and foremost, they unite families and capture our hearts.


Kaylee and her daddy